Stay-Home Dad... no more

Tomorrow, May & I will be switching roles again - she'll be at home full-time with Vera while I'll be back as 'working-dad'. Hope we all can settle-in well & fast with this.

I must really thank my kind & extremely understanding boss for granting me no-pay leave despite the current financial climate. Without which, I won't still be holding onto my job after 10+ months (24/7) of 'patience & endurance'-testing but rewarding experience with Vera. As we know, statistically, T18s' first year is the crucial 'deciding' year. I'm grateful that I was able to spend plenty of time with Vera & glad that we've made it this far.

Been telling Vera for the past 3 days that she won't be seeing much of dad (in the weekdays, daytime) but she didn't seem to respond at all until today..... she suddenly started smiling for a minute long. A big smile which I haven't seen for sometime since the op. As always, I only managed to catch the 'subsiding' one by the time I found the camera.

Maybe is her way of assuring me that she will be just fine (if not, even happier since she'll be hearing more of mum's singing) with this minor change in arrangement.

Happy 13th Month (belated)

Two weeks after the surgery, Vera is now more her normal self. Although she's still weak in the legs and doesn't like to stand like before, at least she's responding to our efforts to cheer her up.
The best part is, there's NOTHING on her face now. No tubes, no rash, no sticky tape. In their place are lips that keep trying to make an 'O', you'd think she wants to kiss you.

The little girl is much, much happier without the ng tube. So we were right to listen to all you mothers who've been there! With nothing in her nose, I think she actually breathes better especially at night, even with a runny nose.

Another blessing is this: there's been not one vomitting ever since the surgery! Even when she chokes lying down. This is big news, coming from the days where she'd puke 2-3 times a day. So, I'd say the fundoplication has done it's job. More on her new button later and the new way of feeding, but all in all, it's good news after the surgery.

Now, we watch Vera not because we need to catch her hand from pulling out the ng tube, but because we love her new chubby cheek look!

Trading Places

From next week, Ian and I will be reversing roles. He will return to work (I bet he’ll miss Vera big time) and I’ll become a PAVE – Personal Assistant to Vera. (Gotta think of a snazzy title for myself, cos SAHM (Stay-at-home mom) doesn’t quite match up to the job.

In my entire working life, I’ve never really taken a break. It was always non-stop from job to job. Working has always been what I’d expect of myself, not so much because I had bills to pay, but because I genuinely enjoy what I do.

But along came the recession, and the big squeeze on companies and their manpower. Employees, desperate to hang on to their jobs in hand, now put in extra hours without protest. The work-life balance that I managed to strike was slowly tipping one way.

I kept playing what one mother said over in my head: “There will always be time to go back to your career. But you cannot go back for their childhood.”

So it's decided.

The opportunity cost will be high, living on one income. The challenges will be many (am I stay-home-mom material?) The future will be uncertain (will I find a job as easily again when I return?) But I’m taking the NIKE road on this: Just do it.

Last year was a roller-coaster ride for us. Looks like this year we’ll still be flying by the seat of our pants, minus safety belts.

Swallowing After Surgery

Vera's angular cleft surgery has had one immediate outcome: Vera now swallows better. For now, it's just water of course. But the improvement is apparent. Because the side muscles of her mouth are now re-connected, she's able to control the swallowing action better. Previously, she would take one gulp at a time. Now, she manages to swallow 2 to 3 times continuously! Plus, she is now able to cup her lips fully over the spoon, and there is no leakage. It's early days, but I believe we've taken the first big step towards improving her dysphagia. Feeding therapy is going to have much better results from now. I just know it. Can't wait to get back to therapy sessions! Once Vera is better recovered from her tummy surgery and her flu, I guess.

March Madness

March is the month of upheaval.

Vera had her surgery. Daddy spent nights at the hospital. Mommy had to run in and out of the office (way too much). My maid had to be sent back to the Philippines (just when we needed the most help!). We have to adjust to g button feeding and maintenance (what a hassle compared to ng tube feeding). Vera has strange reactions to the surgery (poops uncontrollably until her bum’s all rashed up, tummy extra bloated). Vera had ‘hospital trauma’ (cries a howling cry when we touch her and now doesn’t like her mouth to be touched like before). I fell very sick with high fever and a hacking cough (too sick to walk, too sick to blog). I passed it on to Vera. Vera is sick now. Ian is fully stretched looking after her. Ian is going back to work next week. I’ve quit my job (and it’s a recession). We missed her monthly celebration.

I’m glad March is nearly over.

Discharged From Hospital

Just a quick update.

Little Vera has been discharged on Wednesday afternoon! My sincere thanks to all the prayers for her.

Sorry for the late news as we've been busy settling Vera back home after her 8-days of absence. In addition, May has been down with fever/cough since the morning of Vera's discharge. Don't think she's in the mood to write but I feel that we should still keep our friends, especially those overseas, posted on Vera.

For those who have been following our blog, you would notice that this my first post. Been wanting to contribute a bit but never really get myself to do so till now. After all, May is the one better with words & she has been doing a great job blogging.

I sure May would write more later about the hospital stay but, for now, here are some photos I took with my cellphone while camping over with Vera:

A few days after transferring out of ICU. With bandages still on. She was in better mood in the days, eyes wide-opened looking around.

Gave her some oxygen by the mask as her saturations were low in the nights.
This little girl slept late most of the 'nightouts'. This was taken at 2am! Maybe she has been taking more naps in the day, or it's the environment, or she just can't simply fall asleep by herself. I usually need to rock her to sleep at home but don't think it's a good idea after op.

Vera's new look!
I was home for an afternoon nap but my sis, who was there to witness it, says that the brave girl was calm during the removal of stitches on her lateral cleft 6 days after op.

Ebb And Flow

Last night, I had gone to the CICU waiting lounge to get a cheap cup of Milo. (If you hang around enough in a hospital you start to know where to get what.) There were almost 30 people there, rare for CICU as the maximum is 2 visitors at a time. I recognized some to be the family of the boy who was next to Vera when she was there. The boy who had fractured his skull and had brain surgery. The men in the family were huddled in a circle. Among them was the neurosurgeon. The air was thick with tension. Without hearing a word, I knew what the decision they had to make was.

This morning, I went to get my Milo again. The waiting room was empty.

Two things struck me:

How enormous the devastation must have been for the family. To have absolutely no warning and no time to absorb the news must have made it tremendously harder to bear.

Yet, how seemingly small the event was in the larger scheme of things. The waiting lounge was back to the usual quiet disquiet. I thought to myself, how many must have come and gone through these doors. In and out. Ebb and flow. Joy and sorrow. In strict keeping with the laws of nature.

Flying Kiss

"Hi uncles and aunties... now I can blow a kiss to you all."

Vera tries out making a big O with her newly formed lips.

Dedication Beyond Compare

Dear doctors and nurses,

Thank you for choosing to do what you do.
Because of this choice, you’ve missed lunch.
Because of this choice, you work crazy hours.
Because of this choice, you put yourself under immense stress.
Because of this choice, you bear the weight of worried parents.
Because of this choice, you trade personal time for patient time.
Because of this choice, fragile babies and weak children may live better.
Because of this choice, one life gets a chance to change many more.
Because of this choice, Vera received the best care possible,
regardless of her death-sentence diagnosis.
Because of this choice, you’ve given her a smile to melt her parents’ heart,
and a button to help her grow.

To the OT, CICU, cranial facial and paediatric surgery team at KK Hospital,
thank you for playing a part in Vera’s well-being.

Living On A Tightrope

If there's one thing that hits you at a hospital, it is this: You never know how long you will live.

Seeing the on-goings in the Children's ICU while Vera was there shows you the fragility of life. A normal baby, the same age as Vera was next to her, was in critical condition, in a coma I believe. He had a fall and fractured his skull. Doctors were losing hope. His family was outside. Devastated.

Sometimes we think we are so strong, so invincible. But the truth is, we are not. In a flash, our lives can change forever. We are actually living on a tightrope. Only when we fall, do we realise the importance of the safety net - family and friends.

Perhaps the question isn't about how long we live, but how much we treasure the minute moments of our lives.

Let Me Out

This is Vera at her feisty best. The marathon crying continued today, from CICU to the high-dependency ward. Is she in pain? Is it because she hates being tied down (it's to prevent her from touching the lip wound)? Is she hot? Is she in an uncomfortable position? Does she want to be carried? We tried everything to no avail.

Then, we felt her tummy and found it tight as a ball! Ah, the little girl's stomach was distended. This is supposed to be a result of fundoplication, but probably worsened by her non-stop crying. The minute we let out the air - it's call "venting", she stopped immediately. It's as if the pressure had been let out of the ball. Her tummy became soft again.

Ian said, "this is more stressful than at Special Care," referring to the early days when Vera was a newborn. Well, I'd trade this stress anytime for those doom-and-gloom days!

Extubation Successful

What a relief. At 3pm today, Vera was successfully extubated in the operating theatre, and is able to breathe on her own now. What you see planted in her nostrils now is just minimal oxygen as backup. Actually, she had awoken from her sedated state just before the procedure, and was already struggling to be set free.

She's now back in the Children's ICU and has been crying for nearly 3 hours non-stop. A Vera record. Check out the swollen eyes that can hardly open. This is likely due to the surgery pain at the lips and the abdominal area, and morphine withdrawal. The doctors have put her back on sedatives and low level morphine to keep her comfortable. She's also started on milk, just 30mls to begin with.

There's good news though. The ENT doctor did a scope down her airway and it's found to be NORMAL. No floppy airway! What's causing the stridor is probably the low muscle tone of the throat area. And this is linked to her dysphagia. This however, is something that can improve over time with therapy (hooray!)

The hardest part is over now. Let's hope Vera continues to recover well and come home soon.

Still Intubated

After almost 5 hours, Vera was wheeled out of the operating theatre at about 2pm today, straight into the Children's ICU. The operations on her angular cleft, g-tube and fundoplication went smoothly. The only difficulty that arose was in intubating her. As explained by the anaesthetist, her floppy airway and some deviation in the structures there led to a few attempts to properly insert the tube. (Basically, this is the tube that will allow air in and out of her lungs from a respirator, to help her to breathe while she's knocked out.) We were told to expect some scarring (I imagine it's like a straw rubbing against the insides of your throat) but that should subside. She will probably be intubated till Friday. If she's extubated too early and she can't cope on her own, we risk intubating her again, causing more trauma because it'll be difficult.

Currently, she is on morphine to numb the pain. It has a sedative effect as well but apparently not enough. The little girl was semi-awake and struggling weakly (l'il fighter alright), trying to lift her splinted hands, obviously unhappy with having both tied down to the sides of the bed. There were tears in her eyes.

At present, she needs to sleep more than anything. As it is, she has developed eye bags. So we'll leave her to do just that. She's in good care in CICU, so we'd better rest while we can. Once she's out and moved to Hi-Dependency, we'll have to be "on duty" round-the-clock.

The wait for Vera was filled with anxiety, but I guess I've got "training" from the NICU days. It does help lessen the anxiety, of the whole environment, the equipment. I guess the first time is always the hardest.

Sleep tight Vera. Mommy and Daddy are already missing you keeping us up till late at home.

Operation Underway

Vera is now in the operating theatre. It will take 3 hours, so she should be out about 12 noon or thereabouts. We are prepared and expecting her to be taken to ICU after the operation, as the team is being extra cautious in her case. We have the best padiatric surgeon and cleft surgeon on her case, so she's in the best hands possible. Thank you all for your thoughts and prayers. Now for the finger-biting, knuckle-cracking wait...

Pokey Poke

Here we are, soon after admission and Vera's got her first (bitter) taste of pain. Vera was taken into a room to draw some blood for pre-op tests and also to set an IV plug. We were told to wait outside. "She'll be struggling a lot" we told the medical officer. "Don't worry we can manage,"

Next thing we know, we could hear the little girl howling her lungs out inside. We had a feeling finding a vein was not going to be easy for her. Chubby hands and legs don't help here. I knew fixing it after anaesthesia is an option. I should have insisted.

10 minutes of crying later, we asked to go in and calm Vera but were told that it'll be done soon. Far from it. We were called in shortly. After 2 pokes, they still could not get the blood samples. Definitely no IV plug here. Just 2 blue-black feet, red eyes, lots of mucus and a very upset baby.

Now, the plan is to fix the plug after anaesthesia.

Admission Day

As you can see, Vera is completely oblivious to what's in store for her in the next few days. She'll be admitted to hospital this morning at 10am for all the pre-op tests. There'll be a meet-up with the anaesthetist as well. Are we prepared for the op? Nope. But neither are you ever ready for things like this - same goes for getting married, or having a baby, or raising a child. You know there are risks, but you just have to trust your instincts and take whatever happens as it comes.

The operation will take place on Wednesday at 8am (Tuesday 7pm US time). It should last about 2 hours. We hope Vera will be able to breathe on her own emerging from the operating theatre. Failing which she will probably be whisked to the Intensive Care Unit. More updates from the hospital tomorrow.

Going For Surgery

Vera is scheduled for a g-tube button and a fundoplication surgery next week. I’ve heard from other T18 moms that their kids were happier after getting a g-tube. I can imagine, no more something stuck in your nose and throat all the time, no more itchy plasters and face rash, no more tube insertion discomfort. So I was really keen to get her the button. That was a few months ago.

Now, the fact that the surgery is looming so near (it’s Next Week!), I’m getting that not-prepared-for-the-exams feeling. The fear has started to creep in. She has to be intubated as the surgery has to be done under GA. What this means simply is that she will be knocked out and a tube will be put down her throat to force air in to keep her breathing. There have been T18 babies who have had complications with extubation – meaning they fail to get back to breathing on their own after the tube has been taken out. Some have also had adverse reactions to morphine, a painkiller administered after the surgery.

Every time I look at Vera, smiling so blithely at me, I feel guilty, because I know there’s something painful in store for her, but she doesn’t. She doesn’t have a clue what she’s in for. And because there’s no way she’ll know, there’s no way she can be prepared for it.

I’m trying hard to focus on the positives. Vera will no longer have to scratch at the itchy patch on her face. She’ll look much better in pictures. People won’t stare at her and asked ‘What’s that green thing?’ We’re also getting her lateral cleft closed up at the same time. So when it’s healed, we’ll get to see a nice big perfect smile. Not that I’ve ever minded the way her mouth looks, you get used to it, but more to so that liquids won’t flow out so easily when we feed her.

Connie says it helps if you tell them what’s gonna happen before it happens. Like tell her her tummy is gonna hurt a little. So is her mouth. So is her throat. That it’ll be bright and cold. That she'll have needles poked into her. But she’s gonna be ok. She just has to be a good, strong girl and breathe, breathe hard once she’s extubated. And keep at it no matter what. So much to ask of a little girl.

Psychedelia Room

Woah. Check this out. Vera's school has a cool Sensory Room with lots of psychedelic lights, columns of coloured jet streams (with toy fishes) and many other lighted devices. All aimed at stimulated the visual senses of these special kids. The light-loving girl had a busy time staring. What a cool room!

A Happy Place

Mommy went along to Vera's school for the first time yesterday. It was such an eye opener. The teachers were so passionate. The therapist too. We could see the marked difference compared to the one we saw at the hospital. Vera enjoyed the PT, instead of crying like she did at the hospital. The feeling I got, was that this was a 'happy' place. Yeah. Just what I want for the little piglet.

Is She Cross-eyed?

Some of you may be wondering if Vera is cross-eyed. Well, she isn't. The reason her eyes look this way is because of the cloudy veil covering the outer halves of her eyeballs, giving the effect. In her bigger left eye, the haze has cleared just past the iris, and that's enough to see well. In the other eye, it still hasn't. So the little girl is relying on one eye to see. So she opens it up really big!

These days, it's so easy to get a big smile, all you need to do is let her stand.

Another Useless Visit

Vera went to see the Renal doctor today (the same one that called her 'low IQ'). All we wanted was a routine kidney ultrasound for Wilm's Tumour. As suggested by the literature we've read, we should do one every 6 months for Vera.

Ian brought Vera and I was late for the appointment (from work). When I saw him, he had just come out of the room and was fuming. He had asked her for the ultrasound, and she said there's no need because Vera's fine, since her blood pressure is ok. And said Vera doesn't have to see her anymore. She asked what is the basis of getting a scan and we told her about the literature we've read from the states, where so much more research is done on T18. She was quite disbelieving. Ian asked her on what basis she's judging that Vera is ok, and she says because she is the doctor. Okay. You're the head of the pediatric renal dept, so kudos to you for a great attitude.

Why can't she get a scan? We are the ones paying for it. Why doesn't she want to see Vera anymore? A waste of time on a lost cause?

You know what, WE don't want to see her anymore either. If you can't change 'em, change 'em.

Presents Galore

Our little friend is tired out from all the excitement yesterday...lots of catching up on sleep today. Thank you all for the lovely presents.

Vera Turns One

Never did we think this day would come. But it has.

Here we are, among friends and family in celebration of a little girl who has defied logic and surpassed expectations.

It has been the most eventful 12 months of our lives. But those of you who cared graced our journey with love, kindness and most importantly, precious personal time.

Aunties who looked after her; mothers who blog to offer advice and encouragement; mothers who offered their breastmilk and supplements; grandparents who delivered milk; friends who brought little friends over; colleagues who packed lunch and bought diapers and many more.

If we had worried if you would accept her despite her condition, we needn’t have. Your love and concern for Vera comes shining through. She feels it in the way you talk to her, sing to her, cajole her and can’t take her eyes off your face. She’s loving being here in this world, perhaps even more than many of us. Today is for you, as much as it is for Vera, in thanks for all that you’ve done for us.

The Big Celebration

Vera will be the star attraction tomorrow. We'll be celebrating her 1st birthday with family and friends, and the guest list has come up to almost 90 people! Hopefully, the little girl won't be too overwhelmed. But the stimulation could mean very good sleep after the party for her (or the opposite). Due to her low immunity, we are advised to keep her away from big crowds. So fingers crossed that she doesn't catch a bug from anybody. Worry, worry. 'Tis what all mothers do.

Not Being There

A colleague asked me, "How was Vera's first day at school?" I was stumped. I didn't know. I wasn't there. Vera has already been at Rainbow Centre twice. She goes there twice a week, for two hours each time. Who are her classmates? Who are her teachers? How is she taking to the new environment? All the things a mother should know. It struck me that I may be missing out on what is probably the highlight of little Vera's life (don't we all remember how much school meant to us?), because of work.

This is the dilemma of every working mother, isn't it? Working to pay the bills versus spending time with your child. The worst (or best) part is, Vera is now SO responsive, and SO charming that I am actually falling in love with her. As she grows, she most definitely grows on me. Yet, I am not one who can take staying at home full-time. To work or not to work? Perhaps the ideal solution is part of both. How to achieve that kind of balanced arrangement is the big question!

Walk In The Park 7

The weather's warmer. Vera is well. We're at Pasir Ris park. This is as good as it gets.

(The little girl is at present discovering the use of her hands, how they move in front of her face. See how her hands open up? Those used to be tightly clenched at birth, a Trisomy 18 trait. Behold the power of touch!)

Vera's First Tooth

And here it is. The fruit of all Vera's thumb-sucking labour. A little jaggety-edge and leaning at an angle. One year old - one little tooth. How apt.

Chiropractor Visit

Finally after months of dallying, Vera sees a Chiropractor. She confirms that her upper spine is curving to one side quite prominently (scoliosis), as a direct result of her always turning her head to one side (torticollis). As for her right leg it probably because that side of the hip is more locked up and has less motion, causing it to seem shorter. She is also still hyper-extending her neck (head tilting backwards), a sign of neck muscle tension.

Course of action:
1) We have to continue to get her to look to her right instead of her favourite side. We must be careful of overstretching though, because that could tighten the ligaments even more.
2) We have to support the back of her head and keep it from tilting backwards when we carry her.
3) We have to work, work, work at strengthening her neck muscles. Much more tummy time and head lifting is needed. Unless her neck issue – torticollis - is resolved, there’s really nothing much else that can be done.
4) We have to do less carrying and more Vera-sitting-by-herself. Best to have her facing forward, sitting in our lap. Ok, now I’m considering the special bumbo chair. The car seat isn’t ideal, it puts much pressure on her spine.

Teething Toy

This is Vera's hot favourite - not some water-filled silicone teether but a therapy tool called the Ark Probe. The rubbery protrusions are a delight for her itchy gums - one lower front tooth is already peeping out. She's also learning that she can control the Ark probe in her hand (I lightly help her grip it) and move it to and away from her mouth. She's beginning to realise that moving her arm can bring the fun thing for her to bite. Without a doubt, THIS GIRL IS LEARNING. Slowly but surely. All she needs is time.

Feet Fancy

These are your feet, Vera. You often see babies sucking on their toes like it's the most natural thing. But for Vera, due to the stiffness of her limbs and weak spine, she hasn't since birth been able to lift her feet into her line of sight. Until now. Yes, after months of home physical therapy, her legs are now supple enough to bend for her to see easily. Will she get to suck her toes? Let's give her a few more months!

Going To School

Vera is going to school! Can you believe it? Way before normal kids haha. Okay, it's not a school school, but an early intervention programme. Ian and I visited the school today. It has a nice name too - Rainbow Centre. (Yishun Park School). It's brand new, just opened less than a year, has got a big swimming pool and looks like a mini country club. For the first time, I entered the world where disabled kids go to learn. As we toured the school grounds, we saw a puny little girl, probably 4 years old, taking tentative steps in a walker. She walked nearly 2o metres in it! Looking at her, I got all emotional. "Wow, how hard she must have worked to do that!" Tears welled up in my eyes. Would Vera make it to one day accomplish that? The thought overwhelmed me.

What is normally a good few-months wait for a placement turned out to be an immediate vacancy. Vera could be going to school as early as next week! Excited as I am, I am wary about her catching more viruses there. Plus, she hasn't gone for any of her vaccinations, so that is another worry. But that's not gonna stop us from letting her experience going to school. Even if it's for one day!

Mucus Medicine

Today I'm blogging about the medicine given to Vera for her mucus - Fluimucil. It's known to dislodge phlegm from the lungs and help get it expelled by reducing the viscosity. And boy, it's effective alright. Immediately after giving it to Vera, the green goo started to purge from her nostrils freely. This was not as apparent when we gave her Salbutamol. But I must admit it was a little too effective at first - and Vera couldn't cope very well with the copious amounts of dribble and kept choking. But you can hear that her breathing is much better now, so I'm certain there's less mucus in the airway now. Hopefully, the little girl will be back to normal soon...don't be fooled by her smile here, the nights are a dramatically different story!

Mr Mucus Is Back

Our celebration was shortlived. Vera is down with the flu bug once again. We don't know how she caught it this time. Maybe from the chilly weather that doesn't seem to abate, even though it's already near February. Maybe from someone in the crowd during the celebration. Seeing her healthy makes us forget that her immune system is actually rather weak. Mommy has some immune-system supplements generously given by a kind mother but was so busy with the new helper to start them proper. Now is the time I guess. No more New Year visiting for us for now.

My First Ang Pow

Someone got Vera a really pretty dress for Lunar New Year, with little chinese buttons. Unfortunately, we've forgotten who it was! So terrible of us.

Vera had a really good time. She was good with the crowds and stayed up past her usual day naps because of all the stimulation. Thank you uncles and aunties for all the ang pows (red packets) for little Vera.

Happy 11th Month

And here we are, at 11 months, one more to the big ONE. It's like how when you run a marathon, when the destination is in sight, you almost feel light-footed and light-hearted. Here she is, smiling and responding more than ever, enjoy people's company, and her own much more. She's able to sit for longer in her seat, raise her head longer, and even manage a turn or two. She's more talkative than ever. Auntie Jacq once told me during the earlier inconsolable days that the time to enjoy her will come. How true!

For those who enjoy her with us, thank you for walking this far with us to the one year mark! We look forward to sharing much more of Vera's trials and tribulations with you.

One Good Turn

Vera surprised us last night. She rolled over for the first time! We were so proud of her. She'd been practising lifting up one leg to get some turning radius for the past week, and last night she finally did it. Twice.

For those not in the know, this is a major milestone for T18 babies. It shows that her spine is slowly strengthening and she's learning about the motion of her limbs and what they can do. What a great 11th month gift for us!

Who To Believe

Vera's night Darth Vader breathing was worrying mommy, especially when a Chinese physician listened to her lungs and said that there was a lot of phlegm suck inside. So we brought her to Dr. B for an urgent visit to confirm. I was already prepared to have her suctioned again with the machine.

Turns out, Dr B says her lungs sound very clear. The gurgling noises are probably from pooling of saliva in her throat and a floppy airway. The latter is common in T18 babies. The medical term is Tracheomalacia. We'll be seeing the ENT to determine the severity of the problem. Will keep you posted.

Her Old Self

FINALLY, Vera's back. Mr Mucous and friends have taken a holiday and she's her old self once again. The collateral damage is that she doesn't breathe as well as before the bout - now there's a heaving sound through the night coming from her lungs, and intermittent choking on deep-inside phlegm - she sounds worse than Darth Vader.

But a happy girl she is. That's why we even ventured a Walk in the Park - her first time to East Coast Park. She had her first feel of sand and sea! One of the rites of passage of any baby, isn't it? Not much reaction from her though. But the sun in her eyes sure irritated her!

Vera Has Scoliosis

We brought Vera for massage to clear her mucus and the doctor felt a clear S-curve on her spine.

Oh no. So it has worsened. Probably because she enjoys standing so much, but also because her one leg is significantly shorter than the other, by almost an inch and a half, the slanting posture is probably putting strain on her spine. Also, it could be that we've been carrying her upright most of the time since she was a baby, and her neck can't support her head well, putting extra pressure on her spine.

As I see a Chiropractor regularly myself, I know how a misaligned spine can wreak havoc on everything from our breathing, to headaches, backaches, and tiredness.

We are clueless now as to what to do: What is the best treatment now to prevent the scoliosis from getting worse? Do we bring her to an Osteopath, a Chiropractor, a Physiotherapist or an Orthopedic surgeon? We hope to get some answers soon.

I Love My Daddy

I love it when
my daddy carries me
to the window, downstairs,
here there, everywhere.
I like to look at his face
and snuggle in his embrace.

Breathing Issues

Could Vera be having obstructive sleep apnea?

This is her breathing pattern at night: 5 short breaths, followed by silence. Repeat again. Occasionally, 3 coughs, followed by a sneeze. There is a pattern here we know for sure. She's less alert in the day as well, I don't know if it's because she's working too hard at night at breathing.

I've read that it can worsen hypertension. Her latest readings were higher than before, I have a strange feeling they could be linked. Will we have to put her on a breathing machine to help her breathe at night? Does she have floppy airways? Questions, questions...

This cold is really worrying me. It's been nearly a month now since it started. Also, it's the cold season, although we don't have snow, it's chilly, more so since the weather changes became more pronounced over the years.

Vera seems to do alright in the day, upright, and struggles when lying down. I've given up sleeping, given the light sleeper that I am, because I just can't sleep with her noisy breathing. So here I am, being the night watch yet again.

Sleeping It Through

When you can't beat the bug, go to sleep. We brought Vera to see another doc who gave her something to fight Mr Running Tap. It causes her to be drowsy, so she slept most of yesterday. Good for her, and good for us too. Vera knows she's Number One on everyone's minds these days.

A Hard Day's Night

Just 4 days into the new year, and Vera is more sick than ever. This time, Mr Mucous is Mr Running Tap and he's brought with him Cousin Cough and Fever Friend. Vera is no match for them. We looked at her and knew, 'it's gonna be a bad night'. Ian and I were up practically the whole night, suctioning snot, turning her, feeding her, rocking her back to sleep, suctioning snot, zzz, suctioning snot, zzz, suctioning... I try to remind myself that she was the one in discomfort, not being able to breathe and sleep, while I just have to deal with lack of sleep. We've made the call to give her antibiotics, Augmentin, although we know it can be a bit strong for little stomachs. Well, we'll have to take our chances. Tonight is gonna be bad too I dare say. Afterall, she has to get worse before getting better. Fingers crossed, the Superbugs will take a hike and I'll get my happy little girl back.

Chin Up Part I

I'd not been doing physio with Vera for the longest time. I'm at work, she's been sick. So I thought I'd try today just to see how she's doing. The little girl held this position for 45 seconds! So she IS improving - the last I counted was 25 seconds. She can't yet get herself into this position, of course. We place her. Kudos to daddy who has been doing PT with her at home.

Happy 2009 Vera

Dear Vera,

Happy New Year to you. You're 10 months old now. Although you spent the first days of your life surrounded by beeping machines and tubes, you managed to come out and see this wonderful world. Though most times you've been home, you've also been to parks which were too bright for you, you've been on car rides where you enjoy looking at the bright passing lights, and you've seen fireworks for the first time! You must be wondering what the celebration's all about. Let's just say they are for you. Although you've had your 1st fall, your 1st bout of flu, and you're finding it difficult to breathe well with all your congestion in the chest, you're coping with them. From a newborn who could not see or follow very well, you're now captivated by any face that speaks to you and you stare innocently for the longest time. Though you cannot yet swallow well, you did enough to pass your 1st VFSS (swallow study), and you enjoy sips of water by mouth. The best part though is your toothless smile, you respond whenever you're tickled or massaged. All mommy asked for was for you to see and smile - but you've given us so, so much more! Hmmm...looks like we have to set new expectations for you : )

In 2009, you're probably gonna get a g-tube because you're getting quite good at ripping off your ng tube; you're probably gonna go to school for the 1st time (early intervention programme) and get started on vaccinations (we hope you'll take them well).

Mommy and Daddy have been blessed with a lot of people who shower love on you. I think that's why from a highly irritable little baby you're now actually pretty calm and happy (when you're well that is). Love and attention works wonders.

So thank you for coming into our lives. And showing mommy what life is about: Joy through sorrow, achievement through perseverance, and love through kindness.

Happy New Year Vera!

Better Today

After 2 days of intensive care from my mom, Vera is better today. She stayed over and was a great help - a non-stop wailing baby that's inconsolable round-the-clock can REALLY get to you. It reached a point where I just said "I give up", handed her to my mom and went to sleep. At 6am in the morning.

The worst seems to be over. She smiled a little today. And started to stand in our arms. She's only vomitted once. Looks like she's on her way back to the Vera we know. Hooray for Mamas who come to the rescue!

Falling Off The Bed

Vera fell off her cot 2 nights ago. And mommy has every reason to be blamed for it. How did it happen? Aren't we supposed to pull up the railing when she sleeps? How could we be so careless?

Mommy's guilty as charged.

A couple of factors all added up. Usually, I'm the one who gets up intermittently through the night each time Vera sounds off that she needs to be turned. Either because she's heated up on one side, or because of nose blockage. That night, for some reason, I went to sleep in another room. Vera seldom moves like she did months ago, turning 90 degrees in her cot, so it really never occurred to us to pull up the railing. Also, to help keep her milk down during night feedings, her cot is slightly elevated, slanting towards the movable railing of the cot.

The little girl must have wriggled to be turned, all the way until her legs were hanging off the bed. And all this while, Daddy didn't hear a thing. He's not a light sleeper like me.

At 330am, I was awakened by The Thud. It was so loud I heard it from the room down the hallway. It was every parent's worst nightmare. In the dark, I fumbled to see what happened. "She fell off her cot," Ian said. He had already picked her up from the floor. By then, she was wailing. In the dark, I saw blood on Ian's T-shirt. I panicked. "Oh no, she's bleeding...what have we done?" I call Dr B. It was 4am. She told me to put cold compress on her mouth to stop the bleeding before bringing her to the hospital. In a blur, we packed her bag and sped down.

Please God, don't let her head be injured, please, please. Vera finally calmed down in the car, or finally awakened momentarily from the shock. In the bright light at the A&E, we saw that her upper lip frenulum - the soft tissue linking gum to upper lip - was torn. She must have fell head down and the upper jaw took the fall. We fed her and soon she was asleep. In the car ride home, she recoiled several times as if in aftershock.

The past two days have been pretty stressful. She's vomitted 5 times in a day, probably because she's been crying too much. Her upper lip is bruised and blue-black as she's experiences real pain for the first time. Mr. Mucus is back with a vengeance (or did he even go away) and she sleeps fitfully because she can barely breathe through the blockage.

She's stopped standing like she used to in our arms, stopped smiling, and stopped touching her lips with her fingers (her favourite pasttime).

Although there may be no head injury, what I'm afraid of is that there could have been some impact on her spine. We'll be bringing her to a Chiropractor to find out. Fingers doubly crossed.

Mucus Madness

It's crazy. Vera's nose has been flowing with mucus for 13 days now. Sometimes it's green and thick, sometimes thin and stringy. Whatever it is, stuffs her up, cakes up and makes her nostril opening smaller, blocks her airway and causes bouts of gagging when she sleeps, and has to be turned left-right-left through the night. She hates us dabbing it away.

I had a hunch that having the tube through her nose was aggravating the situation, so we switched it to the other nostril. Voila! The former nostril stopped dripping! (at least for now) I'm getting real tired of this tube...

But having recently seen the amount of maintenance and cost that goes into g-tube feeding...cleaning the tubes and sterilising all the apparatus parts after every feed, have also made me think twice. Maybe we'll let Vera decide. The day she can dexteriously pull out the tube, we'll get the message.

Meanwhile, please give Vera a break Mr Mucus. It's Christmas, go on holiday.

Falling Sick

Vera has caught a bug from none other than her momma. I caught it from the office and was down with a bad runny nose and sore throat. Vera caught it soon after. The bout is into its 6th day now. She’s been so stuffed up with mucus and unable to clear it, she sounds raspy with the sore throat, and it interrupts her sleep at night every few minutes because she can’t breathe properly. Ian and I are up through the night, rocking her back to sleep every time she gets choked on the mucus. I’ve tried Illadin nose drops but it doesn’t really help and she hates it. We try sucking the mucus out manually with a nose cleaner but it’s so slow and doesn’t have strong suction power. I’m really tempted to rent one of those industrial ones they use in hospitals…like a vacuum machine! Anything to make Vera feel less congested.

Daily PT and speech therapy is completely on hold and I worry she’ll regress. Already her neck stiffness has gotten worse.

Babies falling sick are so stressful.

Fingers Are Fun

Our dear little friend's best friends: Her fingers. Initially stubbornly clenched, they can now open up at times quite fully, although just for seconds - a feat for Trisomy 18 babies I believe.

And from thumb sucking, Vera has moved on to her index finger...helping to do her own therapy to straighten it.